VISIBL-MS: A bilingual educational framework to increase awareness of early multiple sclerosis

Abstract

Background:

Despite advancements in treatments of multiple sclerosis (MS), there is a lack of awareness of early MS symptoms, especially in students and the public, contributing to delays in diagnosis and treatment. This review aims to identify gaps in tools to increase awareness and to provide a bilingual framework to facilitate recognition of early MS symptoms.

Methods:

We performed a literature review to determine the use of English and Spanish mnemonics in MS education for medical students and patients.

Results:

There is no educational tool to help remember the early signs of MS at present. Here we present a framework for early awareness encompassed in the bilingual mnemonics VISIBLY (English) and VISIBLE (Spanish). VISIBLY stands for (1) Vision changes: Painful vision loss, loss of color vision or double vision; (2) Belly or Back numbness and Balance issues; (3) Limb weakness or Numbness; (4), Young people. Spanish version is included in the manuscript.

Conclusion:

We posit that VISIBL-MS provides a framework for MS awareness that addresses the interconnection between language, culture, health literacy, and health outcomes and can be a useful educational tool to tackle the effects of health literacy on diverse communities.

Introduction

The development of modern diagnostic criteria and implementation of effective disease-modifying therapies (DMTs) for multiple sclerosis (MS) have improved overall disease progression in patients with MS. ¹ However, despite all the progress, diverse communities including Hispanic and African American populations have multiple barriers to MS care, including lack of access and lack of awareness, leading to poor outcomes. ² Furthermore, the knowledge of early MS symptoms among the public at large remains poor, leading to delays in early diagnosis and treatment. ³ In addition, in medical education, neurophobia, the fear of neurology, is experienced by many medical students and may contribute to missed signs and symptoms due to perceived difficulty of neurological topics. ⁴ There is a growing realization that knowledge about MS in undergraduate, medical, general neurology, and public education is limited, and even neurology residents could benefit from increased exposure to MS and neuroimmunology during training. ⁴ There are some efforts, like the ECHO (Extension for Community Healthcare Outcomes) program by the MS society and resident summits by academic MS societies to increase knowledge base of future general neurologists. ⁵ However, these efforts are insufficient to address lack of awareness among medical students and neurologists attending to diverse bilingual communities, since Hispanic and African American communities have critical barriers to MS care. ²

Early signs of MS can go unnoticed by patients given the transient nature of initial symptoms and lack of awareness, only to be remembered after an additional attack that may be more severe, and can be dismissed by physicians with lack of awareness. In addition, many individuals and even general practioners have a preconceived notion that MS is a disease that happens only in the Caucasian population. ⁶ Disease can accumulate sub-clinically, establishing a relative silent period of disease progression or prodrome until a clinically eloquent event occurs, supporting a gap in time between the biological onset with transient symptoms and the clinical onset of MS. Many of these early symptoms are dismissed by patients and primary care physicians, especially in diverse communities. ⁶ We posit that increased awareness at the early stages can allow for the initiation of an appropriate clinical analysis of current and historical neurological symptoms, which may lead to recognition of a prior unnoticed clinically isolated syndrome (CIS). More notably, early awareness can increase the detection of MS since there is heterogeneity in clinical presentations and disease trajectories are worse in Hispanic and African American patients and not all patients will follow a predetermined path. ⁷ However, there are established clinical elements accompanied by risk factors that can help identify people with the highest risk of MS, including those with high-risk social determinants of health (SDOH) elements that can delay the diagnosis; therefore, it is crucial to increase awareness in these populations. ⁸

The goals of modern MS care are to prevent the transition to progression of disability regardless of the subtype of MS and to maintain the “no evidence of disease activity” goal (NEDA). ⁹ Although NEDA is not a potent predictive tool for disease trajectory, it can be helpful to establish a goal of care for patients and non-MS experts to avoid therapeutic inertia or delays in changing DMTs in patients with therapeutic failure.^9,10 Ideally, patients should have rapid access to care without delays in diagnosis and with appropriate initiation of an effective DMT. ¹¹ However, in the real world, delays in diagnosis and initiation of treatment, lack of access, and low health literacy represent preventable catalysts for biological progression. Early diagnosis, treatment and comprehensive care for MS changes the trajectory of the disease and improves the risk of progression. ¹

There is an interest in detecting MS at the very early stages of the disease for those at high risk. There are certain demographics that are more susceptible to MS and have more risk of progression and poor outcomes. Hispanics and African Americans have presentations at a younger age and more active disease. ⁷ The reasons for the susceptibility among Hispanics and African Americans are unknown, but there are postulated intrinsic biological differences, in addition to SDOH.^2,7 At the prodromal stage, MS may have an inconsistent and myriad of symptoms that lack precise neurological localization, including brain fog, fatigue, depression, and urinary symptoms. ¹² Currently, several biomarkers for early detection are being studied, but there are many unsolved questions before clinical deployment. ¹³ These realities have led to several pressing goals to target unmet needs and gaps, including raising public awareness among patients, families, and early trainees including students, residents, and general neurologists. ¹⁴

Mnemonics can improve the recall of information with a memorable word and mental visuals for retaining health information, especially in students and the public. This approach has been successfully employed for many disorders, including stroke education with the mnemonic “BE FAST.” ¹⁵ Here, we performed a literature review of education and early awareness tools for MS and found that there are no such educational tools. To address this gap, we have devised an educational framework to facilitate memorization of the CIS in a memorable mnemonic useful across English and Spanish. This is especially targeted for the education of pre-medical students, medical students, and the public with special attention to diverse communities. We posit that increasing awareness about MS, like what has been done for stroke, will facilitate education at the early stage for students, decrease neurophobia, and help patients increase their proactive participation in prevention and treatment.

Methods

Literature review

We performed a literature review to determine the use of educational tools and mnemonics in MS education for medical students and patients. Furthermore, we reviewed early warning signs reported in the literature of adult patients presenting with MS. We performed literature searches using MEDLINE/PubMed, Scopus, Embase, Web of Science, Cochrane, and National Institutes of Health (NIH) databases beginning from 1990 and reran searches periodically up to 2023. The literature searches were performed using variations and combinations of the following keywords and phrases: Early onset MS, Multiple sclerosis AND medical students, Multiple sclerosis AND medical education, prodromal MS, clinically isolated syndrome, radiologically isolated syndrome. All searches were limited to studies of adult humans from English and Spanish language sources.

Establishing the elements of the bilingual mnemonic and design of the infographic

Elements of the mnemonic were selected as a parsimonious set of signs to describe the early warning signs in young individuals with MS based on the robustness of the association, based on the literature and the combined efforts by the authors. The translation to Spanish was done taking into consideration cultural and linguistic components available to the co-authors who are native speakers. The infographic was designed to include visuals for non-verbal association of areas of the body affected by initial attacks. The infographic includes several colored lines some in degraded hue to symbolize color desaturation observed in optic neuritis (Figure 1). The choice of including both VISIBLY and VISIBLE in the same documents was to reinforce bilingual learning for medical students and the public in general.

Figure 1.

Infographic with visual representations of the elements of the “VISIBL(Y/E)” mnemonic. Gradients of green and red are included for teaching of color desaturation which is often observed in optic neuritis. A text of “how to use and disclaimer” is included in the paper to facilitate proper use with a translation to Spanish.

Results

Paucity of educational efforts and tools to increase awareness in early MS

We reviewed 369 publications that addressed education in MS using the search strategy mentioned in the “Methods” section. Of those, 21 publications mentioned education tools, but only 1 was a tool for MS signs. This study focused on assessing the clinical usability of the (MSProDiscuss), a tool developed to facilitate discussions between health care professionals and patients about signs of MS progression and not for awareness of early symptoms and recognition in undiagnosed patients. ¹⁶ In addition, there were no such Spanish publications with education tools in MS. We found no specific publications of education tools or mnemonics of early awareness of MS; therefore, a systematic review was not possible.

In the past, there have been proposed improvements in MS education for medical students based on the reported needs, but these exclude early awareness. ¹⁷ Some proposals have included undergraduate exposure and established lectures for students. ¹⁸ Online educational tools have been proven to be useful for patients to improve their knowledge and awareness ¹⁹ ; however, the medical education of important and emerging diseases in the classroom and outpatient setting is suboptimal, leading to many challenges. In our review, there were no tools to improve retention for MS symptoms or to combat neurophobia. Therefore, the goal of our tool is to increase awareness and decrease neurophobia to ensure that the clinical presentation of demyelinating syndromes is treated as an emergency, avoiding delays that place the spinal cord and brain tissue at risk.

Defining validated elements of the mnemonic VISIBLY (English) and VISIBLE (Spanish) and infographic design

We created closely related mnemonics that standardize MS-specific messaging across both English- and Spanish-speaking populations. We created a visual aid (Figure 1) which could be adapted as an education tool for both the students and the public. The individual components of the mnemonics are explained below and are selected based on epidemiological studies confirming their association with the risk of developing MS.

• Vision (VISI): The cumulative risk of developing MS after optic neuritis in 15 years is 50%. ²⁰ Moreover, more than 50% of patients with MS have optic neuritis at some stage of the disease. Acute painful unilateral vision loss is typical for optic neuritis. Less commonly painless and/or bilateral vision loss may be experienced. ²¹ Color vision impairment is also associated with optic neuritis from damage caused by MS. Impairment in color vision might also be associated with greater severity of the patient’s MS. ²² New onset of visual impairment is at the center of early MS awareness and therefore is critical to our mnemonic. It is important to note that although optic neuritis is associated with pain in MS, vision loss can occur without this trademark phenomenon as well. Another common visual symptom that occurs in MS is ophthalmoplegia and diplopia from damage to the cranial nerves that control eye movements. It is important to note that Hispanics with MS present with optic neuritis at higher rates and younger age compared to white Americans. ²³

• Belly/Back Numbness and Balance alterations (B): Acute transverse myelitis (TM) can present with loss of sensation within a spinal level, often involving the abdomen and the back, and leads to the estimated diagnosis of MS in 62% of patients within 30 months. ²⁴ Despite its clinical impact, it is not a relatable or recognizable phenomenon for many patients and students. ²⁵ Many patients manifest pain, weakness, and sensation loss of lower extremities. The risk of conversion of isolated TM to MS is increased in patients with a family history of MS, severe disability, brain lesions on magnetic resonance imaging (MRI), and oligoclonal bands or abnormal IgG index in the cerebrospinal fluid (CSF). ²⁶

Balance alterations can be an early manifestation in MS patients which can be overlooked if subtle and can be associated with a brainstem syndrome. ²⁴ Therefore, inquiring about alterations in balance early on can be key to capturing enough burden of symptoms. Changes in balance and gait initiation are seen in early-stage patients due to alteration of motor modulation of stance limb kinetics during gait initiation. ²⁷ Finally, exercise-induced gait deterioration is an early symptom that limits ambulation, becoming more prominent with increasing neurological disease and also observed with the get-up and go test.^28,29

• Limb numbness and weakness (L): Motor deficits and muscle function impairment are cardinal features of MS from the beginning of the disease. They are almost always present in advanced disease and have been reported in up to 80% of all patients with MS. ³⁰ Due to lesions typically affecting upper motor neurons, spasticity of the limbs can accompany weakness or exist on its own.

Numbness includes paresthesia that are also associated with MS and TM and often accompany limb weakness. ³¹ These can be very distinct symptoms to patients and when MS is suspected, inquiring about tingling/burning/numbness/pins and needles sensations should occur if the patient does not volunteer this information. A particularly noteworthy and classic complaint is Lhermitte’s sign, an “electric shock” sensation that travels down the patient’s spine, propagating into the limbs. ³²

• Age (Y for young age in English and E for edad joven in Spanish): Age of onset is a particularly unique characteristic of MS. It is an acquired neurological disorder typically affecting young adults, classically between the ages of 20 and 45 years. Early diagnosis has been associated with improved outcomes. ¹ Although MS can have a late onset in patients >50 years old, younger individuals including the current social generations X (1965–1990), Y (1981–1996), Z (1997–2012), and Alpha (early 2010s) are most susceptible to MS. In these populations, there is an increase in self-medication practices and lack of awareness of neurological diseases despite a high degree of digital connectivity. ³³ Interestingly, there is an increase in health care utilization by undiagnosed MS patients during the prodromal phase; however, more research is needed to determine whether the utilization leads to earlier diagnosis.^3,12 In minority patients, survey results indicate decreased access to appropriate care partly due to dismissive attitudes by health care providers who attribute symptoms to other diagnoses. ⁶ This situation is worsened in African American and Hispanic young adult communities with less health care–seeking behavior as evidenced in increase in stroke in young adults of diverse communities, making increased awareness a priority. ³⁴ Not falling within the 20–45 age range should never be an exclusionary criterion as reports of MS onset as early as 5 years old and as old as 67 years old have been described.^35,36

How to use VISIBLY/E and disclaimer

The layman terms text is included below to facilitate proper use of the mnemonic and visual as a educational rather than a diagnostic tool. A shorter version in Spanish highlighting the essential points is also provided below:

• English text: Please use the mnemonic and the visuals in Figure 1 as a memory tool to recognize possible early signs and symptoms of MS. The color gradients of green and red hues are included to illustrate color desaturation, a phenomenon often seen in people who experience optic neuritis, which is often an early manifestation of MS. VISIBLY/E should not be used to diagnose MS. It is simply a way to raise awareness of early MS signs and to prompt a thorough evaluation and necessary testing by a physician to make sure MS is considered given the presence of VISIBLY/E symptoms. If you or your patient has experienced these symptoms, please consider the possibility of MS among other neurological conditions. Please note that MS can present in several ways and this mnemonic does not include all symptoms, for instance, face numbness is not included. The diagnosis of MS is made using diagnostic criteria which typically requires imaging and other laboratory testing in addition to clinical signs and symptoms.

• Spanish text: Por favor use el instrumento VISIBL-MS para reconocer los signos y síntomas de la Esclerosis Multiple (EM) temprana. Los diferente tonos de rojo y verde representan la pérdida de saturación de colores, que afecta los pacientes con neuritis óptica. El instrumento VISIBLY/E no debe ser utilizado para diagnosticar la EM. Es una forma simple de incrementar la vigiláncia para la EM y alertar a los médicos para que se haga una evaluación rapida basado en los síntomas “VISIBLE.” Si usted o alguna persona tiene estos síntomas, por favor considere la posibilidad de EM y la necesidad de ir a un médico o a la sala de emergencia. La EM puede presentarse de varias formas y los síntomas presentados no incluyen todos los síntomas de la EM, for ejemplo, adormecimiento de la cara no esta incluido. El diagnóstico de la EM es basado en criterios diagnosticos, que requiere imágenes del cerebro y exámenes de laboratorios además de síntomas y signos clínicos.

Discussion

To build an educational tool to capture early stages of MS, it is required to concentrate on the most frequent presentations. Eighty-five percent of MS patients present with a CIS, an episode of neurological alteration with an established phenomenology localizing to heavily myelinated regions, including the optic nerve, brainstem, and spinal cord. ⁸ CIS describes the first clinical episode of an inflammatory demyelinating disorder. The term has been applied to young adults from 20 to 45 years of age who experience the episode for at least 24 hours in the absence of fever or infection. ⁸ Further evidence of lesions on MRI and oligoclonal band testing in the CSF with the application of the McDonald criteria typically yields the diagnosis of MS. Furthermore, the prodromal phase of MS is accompanied by non-specific symptoms that in the right context should increase the concern for MS. The purpose of the mnemonic is to raise awareness of at-risk population including diverse populations, in addition to offering medical trainees an educational heuristic that encompasses CIS symptoms in a bilingual manner. This mnemonic may be incorporated into care when there is concern for neurological disorder with symptoms that are represented in the mnemonic. The tool has additional embedded educational features like visual representation of symptoms and color lines that can help to learn additional clinical features like color desaturation (Figure 1). It does not exclude the possibility of other overlapping diagnoses but rather serves as a reminder to keep MS in the diagnostic thought process, as well as potentially reduce neurophobia that is associated with diagnosing neurologic diseases.

The clinical presentation and course of MS are highly variable, but despite diagnostic criteria and effective medications, there are significant delays in diagnosis and treatment, associated with a lack of appropriate training starting at the medical school level and lack of awareness of the public, especially in individuals with low health literacy and significant barriers to accessing care. This mnemonic does not attempt to replace key diagnostic criteria such as the McDonald criteria, including CIS, oligoclonal bands, or contrast-enhancing and non-enhancing lesions on MRI. It is rather designed to remind users, especially students and patients from marginalized communities, of symptoms of MS and increase their self-agency and education of MS. Using the mnemonic as a diagnostic tool is not advised and can lead to misdiagnosis due to the overlapping symptoms between neurological disorders and the absence of imaging and CSF testing criteria in our mnemonic. A limitation of our framework is that it excludes aspects of brainstem syndromes such as facial numbness and other cranial nerve palsies which are included in accepted diagnostic criteria as possible classic presentations of MS.

There is mounting evidence that when the diagnosis of MS is made close to the biological onset, after a clinical event and treated with appropriate medications, there is a greater impact on the trajectory of patients who otherwise will accumulate clinical and subclinical disease with pathological progression. Despite some uncertainties due to a lack of prospective trials, there is a realization that early intervention with medications tailored to a risk assessment for progression has changed the trajectory of MS. ⁷ More work remains to be done since there is a growing understanding that patients with the highest risk of progression of disability are those with significant SDOH barriers, including African American, Hispanics, and rural patients in neurology deserts. ³⁷ Here, we built a proactive educational tool to educate students based on consensus signs for early awareness in MS, based on current evidence, which can be used in bilingual settings. It has been shown that educational tools for patients in English cannot be translated literally into Spanish and there are benefits of creating dedicated tools for Hispanic patients. ³⁸ Therefore, reinforcing the similarity of VISIBL mnemonic in English and Spanish has the potential to increase the likelihood of MS awareness and symptoms recognition among US-born Spanish speakers and also Spanish speakers in other countries.

We posit that VISIBL provides a framework for MS-specific education that addresses the interconnection between language, culture, and health literacy and could improve health outcomes. The VISIBL framework is intended to be applied as a teaching tool in medical and health education to alert of possible symptoms and signs of MS. This visual strategy aids in the early identification of early MS signs and helps learners to retain information. Our infographic in both Spanish and English can be downloaded and shared with students and within the medical community at http://www.imitolab.org/visiblms.html.

We believe that framework VISIBL-MS (Figure 2) can help to bring together CIS and the MS prodrome, a more recent addition to the MS continuum. Tremlett et al. defined the MS prodrome period as “a myriad of signs and symptoms” identified as more common during the years leading up to MS, as compared to persons without MS. These symptoms include fatigue, cognitive issues, mood changes, sleep changes, and bowel and bladder dysfunction. ¹² Fatigue is a cardinal feature of patients diagnosed with MS, but also part of the MS prodrome. While a multifactorial and nonspecific symptom, fatigue is one of the most common complaints of MS, with an estimated prevalence of up to 83%. ³⁹ While these symptoms in isolation are not characteristic of MS, presence of any “minor” symptoms of the prodrome that cannot be explained by other diseases, especially if found in conjunction with one of the more typical elements found in the VISIBLY/E mnemonic, may help raise clinical suspicion of MS. The inclusion of “Myriad of minor symptoms” (MS) in our framework will serve as a memory tool for students to recognize frequent manifestations of prodromal MS in the context of other more specific features, as illustrated in Figure 2. We emphasize that the VISIBL portion is the critical one to identify localizable direct damage to the brain, enhancing the diagnosis of MS by recognizing CIS since prodromal symptoms are more vague.

Figure 2.

A novel heuristic framework of the MS continuum to facilitate education of clinically isolated syndromes (CIS), making up the VISIBL mnemonic, as well as related myriad of minor symptoms (MS) that may be observed in prodromal MS.

Further evaluation of the VISIBLY/E mnemonic and its function as an educational tool is needed to determine its effectiveness of the clinical educational tool. We have introduced this mnemonic within the medical school neurology clerkship curriculum at the University of Connecticut School of Medicine. Future validation will be held at the pre-clerkship and clerkship level. Surveys will be issued to first and second year medical students before and after their neurology system blocks on their comfort recognizing signs and symptoms of MS. A similar pre/post-survey is currently being utilized for third year medical students before and after their neurology clerkship. While the individual components of VISIBLY/E capture common presenting symptoms and demographics of MS, this list is not all-encompassing and as such should not be used as a diagnostic tool; however, we posit that awareness in medical students and families could be critical to improve diagnosis and treatment of MS. Recognizing the presence of even one or two elements from VISIBLY/E with or without the minor symptoms (MS) component should be followed by promptly alerting the primary care doctor or a neurologist for the need for MRI. VISIBL-MS would help aid with the delivery of the goals of modern MS care that are proactive, participatory, personalized, and preventive, framed in the so-called P4 medicine. ⁴⁰

Although patient education is part of the strategy to improve access, we think VISIBL-MS will engage patients to seek more adequate help if there is a persistence of symptoms. Obtaining adequate care and navigating the health care system is already complex and defeats many patients, especially if there are language barriers preventing patients from elaborating about their symptoms. We believe that VISIBL-MS can empower patients and families to navigate seeking neurological care and can help the providers since patients can discuss the elements of VISIBL that they are suffering. This is the first mnemonic of its kind for MS awareness which also aims to have a relatable design and is bilingual in nature. VISIBL-MS may open new avenues for research for future MS mnemonics and tools for bilingual awareness of MS.

Finally, sharing the VISIBL-MS infographic on media platforms used by the highly digitally connected younger generations can serve as a tool to educate and increase awareness of the general population about early warning signs of MS, especially students.